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Post-exertional Malaise in ME/CFS - Webinar for Health Professionals great webinar on PEM and pacing

'hardware changes, which we used to not think existed, .... and indeed many of which probably don't exist because the imaging studies tend to be small, and the findings are unreplicated or even countered in subsequent studies and are contaminated by a great deal of bias in their interpretation...

On Dr Sherr who is speaking at the event: https://www.linkedin.com/posts/kaylabarnes_hyperbaric-oxygen-methylene-blue-with-dr-activity-7029063501264404481-P2kr/?originalSubdomain=om buccal troche - a lozenge Some warnings, there are probably more things to be aware of. It can also cause...

Some posts about Functional Neurological Disorders (FND) have been moved here: Functional Neurological Disorder (FND) - articles, social media and discussion

If there were a number of patients who had taken part in a BPS study, and who could document that they had reported feeling worse and had instead been told to ignore their symptoms and push through, and who then seriously deteriorated, maybe that might be a core of a case? Especially if the...

:rofl:, had me laughing while drinking tea, with a mildly bad outcome

What rule-in signs? There's a paper discussed here on the forum that actually said that the bringing in of a soft toy to the clinic was a sign of FND (yes, really), along with the suggestion that being young and female contributed to the FND diagnosis. Here it is: Evidence-Based Practice for...

It's not clear from the article, but it sounds as though the patient organisation influenced the development of the Long-COVID Challenge. It's a smart idea if people have, or can develop, connections with a Medical School. A small amount of funds can get some preliminary research happening...

https://www.medicalnewstoday.com/articles/319867 I know you can google as well as the rest of us @Mij, but I thought I'd share that link to discuss it. It, like other websites, mentions vertical ridges as being very common in nails as people get older. It also mentions anemia/iron deficiency...

I though this was a pretty decent snapshot in time. Hungarian authors. They do a good job of traversing the research to date and conveying the lack of epidemiological clarity and the uncertainty about etiology and treatments. Tables 2 and 3 are nice lists of ongoing and completed treatment...

Somewhat easy, but can't be timetabled. It can be hard to know when florid PEM will strike and how long it will last for. I think you'd either have to have people come into a residential clinic for a few days to do triggering activities and then wait for the full-on PEM, or have systems for...

That depends on which patients. Especially if the scope was such that it was relevant to Long Covid, I think enough very wealthy people have been affected that it would be possible to find one able to fund a documentary.

I imagine these organisations are big and variable, producing and screening both quality content and rubbish. As already pointed out, it's probably largely a matter of finding the right decision-maker - probably someone with personal experience of ME/CFS or LC. Or finding a celebrity willing...

Nice to see this highlighting of the issues with Fukuda.

Looks like a solid study from what I have read so far. From NCNED 21 studies on urine in ME/CFS were found. 14 properly matched ME/CFS participants with controls. 16 noted the ME/CFS criteria used. 11 are reported as using appropriate statistical analysis 8 studies investigated...

If there's a block in UK establishment media, there are ways around that. A lot of people watch tv content from streaming services (Netflix and so on). Those services commission their own material. There have certainly been similar medical documentaries produced by these providers. A...

That interesting review covers McArdle disease and mitochondrial myopathies On mitochondrial myopathies: I note the last point about higher than normal respiratory exchange rates in exercise tests in people with mitochondrial myopathies. We've seen the RERs of people with ME/CFS reported as...

Can we definitely rule out rhabdomyolysis as part of the delayed response that is PEM? It seems to fit, for me, with the dark urine and kidney ache and all. I wonder if testing for metabolites has actually been done enough when people really do have the full-on PEM experience with pain and...

It's a really good question. Maybe it is because the FND doctors really do know that giving someone that diagnosis is making an unfavourable statement about that person's personality. And, if the cause of the symptoms does actually end up being a tumour, or MS, or Creutzfeldt-Jakob disease...

Thread for that paper here: The neuroimaging evidence of brain abnormalities in functional movement disorders, 2021, Sasikumar and Strafella